We had just parked in front of my in-laws for a Thanksgiving dinner. My not-so-little Mitch, always asserting his independence, began to walk awkwardly down the slight slope of their front yard to the front door. Walking can seem like such an easy thing to those of us who have muscle strength. But to Mitch, walking was difficult ... as evidenced by his awkward gait and increasingly visible struggle to lift his legs high enough to put one foot in front of another. Despite his independence, he would need help up the stairs.
Mitch was so interesting; whenever life seemed to take things away from him, his gratitude for what remained only grew stronger.
He shared his gratitude for life on many occasions and in many different ways. Each time he expressed his gratitude for life, his words were simple and profound. One day I will post the audio from a one-on-one interview with Mitch where he said "I'm grateful for life."
I think he sensed early in his life that he would only be here a short time. He knew it, in a way, just like I knew it; except I think he knew it without knowing it.
I wonder if one of the reasons he valued life so much was precisely because Mitch sensed something was seriously wrong.
Whatever the reason, because this young boy was so grateful for life, he lived and loved deeply - never taking a minute or moment for granted.
He gathered gratitude like a wise traveler might store up oil for their lamps ... in preparation for those long, dark times when the only light we might ever see will come from the light within.
Gratitude not only strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.
As the winter sky drew dark Mitch began to fade. He didn’t need to say anything, his tired eyes said a million things at once. Natalie tenderly scooped him up in her arms and carried little Mitch to his room. My heart sank as I saw my little boy listless and drifting away. I could almost hear death violently gashing at our door … about to barge in like a terrifying home invasion to steal my son away.
Later that night I prayed to my Father, knees bruised from prayer. I prayed the words of a broken son and terrified dad in need of comfort and council, “Oh Father, how am I to do this difficult thing? I’m so afraid. My hands and soul tremble. I love my son and don’t want to see him suffer. I will take his place, if you will allow me. Please … not my son. If there is any other way … please …”
I often hear people speak of God’s grace when their children are spared suffering or sorrow. Some will say, almost in a tone of victory, “God is good. All the time.” But what happens when our children are not spared? What then? What happens when things go from bad to terribly, horribly, unimaginably wrong? Has God forsaken us? Has he left us abandoned in a wasteland of grief and sorrow? My experience tells me no. In fact, I have come to see there is a purpose to all things … and when I quiet my mind and focus my spiritual eyes, however blinded by tears, I begin to see things as they really are. That gives me hope.
The death of a child is uniquely and exquisitely painful, whatever the age. At least for me, my son’s passing at the age of 10 was a scene from my worst nightmare. As his father, Mitch saw me as the ultimate problem solver, his protector and soul mate. He was so innocent and believing and good. Yet, despite all that we tried to do, I was unable to save my son. With that harsh reality comes unavoidable feelings of failure and regret, despite what I already know. Such is the burden of grief. And a terrible burden it is.
Though the path that lay before us was dark and frightening, I also know my Father put a dim lamp before our feet so we could find our way. We knew we were not alone. Despite our journey through the dark wilderness of grief, we have come to realize were not abandoned. Not once. To the contrary, in our moments of greatest darkness we were carried, sight unseen. I can see that now. I can see it plain as noon day.
I don’t know the secrets of heaven, however much I wish to see and understand them. I don’t know why innocent children are made to suffer. But they are … and they do. God could stop it, but He doesn’t. Clearly suffering is allowed to happen. So, rather than shake my fists at the heavens – as though my puny protests could change the grand design … I have learned to listen with my soul and see where I was once blind.
I have learned that bruised knees and broken hearts are important keys to building our spiritual parts. Being human we would avoid pain and sorrow … but that is where growth starts: bruised knees and broken hearts.
It was an especially hot summer day when two mothers and 4 children walked into Pioneer Park, each with an arm full of gifts they were about to give away. Quietly they began placing all manner of toys throughout the playground. Each toy had a sticker attached to it with an invitation to play with and keep, signed Mitchell’s Journey.
Cathy O’Grady, a follower-turned-friend from Boston, was in Salt Lake City and wanted to do something in memory of little Mitch. So, she purchased two carts of toys that included baseball bats, footballs, bubbles, chalk, soccer balls and other things kids used to play with before the advent of technology … before the age of digital isolation and endless distraction.
She was kind enough to let me follow her and a friend, Tracey Langston, so I could take photos of their random act of love and kindness in memory of Mitch. Each of them wore a Miles for Mitchell shirt because they wanted to take my son with them.
“Watch how parents will put their phones down and suddenly start playing with their children when they’re given a toy.” Cathy said. Sure enough, exactly as she described, I saw it with my own eyes. Parents who moments earlier were busy scrolling through never ending streams of Pinterest posts, social feeds, texts, emails and other things suddenly set their devices down and began to play with their children.
I saw adorable little kids stumble into a lonely soccer ball, pick it up with curiosity and then show it to their parents as though they won a lottery. I marveled at how these small, inexpensive toys changed how people interacted with one another. As these anonymous gifts were discovered, the playground went from friendly to an excited frolic.
After these good Samaritans were done placing toys … when parents and children alike were playing with one another, I told Cathy how humbled I was by her act of kindness. As my eyes filled with tears … fighting back a wave of grief … I told Cathy something about little Mitch just before he passed away. As Mitch was facing the realities of his own death he wept and wept as he told me how much he wished he could be like regular kids. My soul unraveled and my heart fell to the floor as I heard my son describe what he wanted to do in “real life” but could not. “Dad, I don’t want to ride a skate board in a video game, I want to do it for reals.” Mitch sobbed in ways only a dying child can know. And my soul writhed.
I told Cathy how grateful I was for the gifts she gave others. She didn’t just give toys, you see. These little gifts were a means to a much greater end. Cathy gave the gift of play. The gift of relationships.
So, on this hot summer day, never a swing set looked so empty, yet felt so full. I wanted my little boy to be seated there and was pained that he was not. I wished with all of my heart I could push him back and forth, long after the sun set. I wanted to play with Mitch and see his face and hear him laugh, yet he was forever gone. Instead, I saw other children and parents enjoy what I no longer had – and yet my heart swelled with gratitude for their happiness.
I am so grateful for people like Cathy and Tracey … who seek to build others up and serve with love. I wonder how the world would change if everyone gave freely and not want anything in exchange. Something divine happens when we love and lift … for the very act of giving is itself a supernal gift.
You can see more photos of this experience at the park on instagram.com/mitchells_journey/
You can also learn more about Cathy and the many other good works she is doing here: http://sofiasangelsfoundation.org/
Winter was pressing gently on us and the skiffs of snow and crisp air seemed to promise colder, snowier days ahead. With the holidays approaching, Mitch was excited about the season of dad’s famous hot chocolate, sleigh riding, popcorn and movies by the fireplace, Christmas presents and lots of cuddles. The little boy in me was excited, too.
“When I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts?
One is hollow, emptier than empty. The other is rich, filled to infinity.”
I left a busy day of work so I could meet little Mitch at the University of Utah Hospital where he was to meet with Dr. Flanigan, a specialist who is leading some research with neuromuscular disease and DMD.
Just 20 minutes prior to taking this photo I was in the hall of the hospital peeking at Mitch through the door of an examination room that was open a crack. I was pretending to sneak around while a nurse was doing some benchmark tests. Mitch kept trying to hold in his giggles as if we were both going to get busted. I remember when I was a young child trying to prevent a giggle at church or in school … it was always the moments you weren’t supposed to laugh that seemed to make giggling the most intense. Mitch was having one of those moments where he was about to lose himself in laughter. The nurse played along and pretended to be stiff and orderly – but in her heart, she was giggling with us. I was so grateful for medical staff who care for the heart and soul as much as they do the body.
At the end of the doctor’s visit, I kissed my wife and kids and said goodbye. As I started to walk to my own car, Mitch turned around and smiled as I said “I wuv you Mitchie!” My heart was overflowing then and it overflows today when I look at this photo and see his smiling face.
I don’t remember the substance of the business meetings I had that day, but I can tell you the meaning of these moments and what happened with my son. I remember what happened because that’s what matters most to me and I chose to be in the moment. If I wasn’t careful, I could have shown up at the hospital but never really arrived. I know how easy it is to be distracted and disconnected from what is in front of us. From the digital devices that entice us away to preoccupations of work or hobby … or perhaps simply stress; it is easy to be somewhere but nowhere.
I have discovered the true present of being present. Not only did being fully engaged with my son mean a lot to him then, reflecting back on this moment now is a gift of comfort to my weary heart. It is a reminder to me, when I’m tempted to doubt myself, that perhaps once in a while I got something right. It motivates me to keep getting things right. I miss the mark more often than I want to … but I keep trying.
Just the other day I was visiting with my mother about life. I asked her, “What is the one thing in life that has most surprised you?” She said, “The brevity of it.” I immediately felt the truth of her words. Life is brief … and moments are briefer, still. How easy it is to be swept away in the thick of thin things and be robbed of life’s greatest gifts. This photo is a symbol of the present of being present.
So, when I think back on this cold winter day, while we were carefully wrapping presents we'd soon give away … I realized that very moment the greatest gift we can give one another is time and attention: love from mom and dad, sister and brother. It’s never toys and things our kids are really after … but love, acceptance, guidance and laughter. Those are gifts of greatest import … for life, after all, is exceedingly short. And when I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts?
One is hollow, emptier than empty. The other is rich, filled to infinity.